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My name is Shanni and I have just been diagnosed with stage 3 ckd.
I am totally bewildered at all this as it was only 18 months since I had my last blood test and everything was fine then. I have been trawling the internet for information and I can only find negativity about it. I'm at a loss on what to do next because I am also being investigated for bowel cancer and the doctor says that my kidneys are a red herring but from what I am reading it is just as important is it not?
It's not like I don't look after myself because I am a Class instructor/personal trainer and I do live a healthy lifestyle. I always make home cooked food but from what I have read it says that the majority of the food I am eating has to be reduced so I do not have a clue on what I am ment to eat in it's place. I don't have added salt or sugar, I only have milk for a late night Horlicks and I drink less than 10 units in a week.
As it stands the doctor has put me on ferrous sulphate because he says that I am borderline anaemic and that they will fine tune my kidneys at a later date. Lately on some days my body doesn't feel like it wants to work and I do get a little back pain. Is this all related?
I could just do with some real advice from real people going through the same issues if you don't mind. I also apologise to all those on here that are in a worse position than me if it seems like I am a moany pants
Newly diagnose with CKD and in need of loads of advice
First of all sorry to hear of your bad news. Have any doctor said why you have reduced kidney function, what level is it at...what were your kidney function levels on your last test? If you have a genetic condition then nothing you could have done would have stopped your kidney function declining, in fact the healthy lifestyle you live has probably helped preserve your kidneys and has given you a headstart in your new lifestyle journey.
For diet advice I would say that you need to work with a dietician, they will look at your blood test results and make suggestions on diet changes. Everyone is slightly different so there is no one renal diet (which makes it complicated!)
The best advice I was ever given is to learn as much as you can about your condition, I think evreyone I spoke to in the early days said this.
Richard
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.
My living donor and his family are doing all well.
Hi Shanni firstly you are not a moany pants , it is very understandable you are worried. It also must be a terrible shock to possibly have bowel cancer and a kidney problem as well. You really need your doctor to clarify the situation for you i.e why has your kidney function declined ?, can it be related to cancer or is this 2 seperate issues ? and lastly why are they not dealing with both at the same time ? Talking to a dietician is a very good idea. Your lifestyle is so healthy this will help you I am sure. Ask any questions on here everyone is very helpful and posative, or if you are just plain old down and want a moan about it or a chat do that as well. Let us know how you are getting on and nice to meet you Jan
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
Understandable you are worried. Your doc. Needs to monitor you so as to find out if your kidney function is stable or if there is a downward trend over time. He also should be determining if this is age-related although you sound too young for this to be a conflicting issue. He should also be referring you for possible kidney biopsy to determine cause of your kidney insufficiency, since some can be managed with medications depending on underlying cause. He also needs to monitor your anemia, since it will only respond well to iron therapy if this is an iron-deficiency anaemia. Damaged kidneys do not produce enough quantities of a hormone called erythropoietin, often shortened to epo. This is treated by injection. For me, the anemia was one of the earliest manifestations of my kidney disease. At least your has been diagnosed early. I went on for yours being diagnosed with iron deficiency anemia and 'women's' problems before a more enlightened doctor decided to look further. By this time I had 25% function (?stage 4) and then a progressive decline to dialysis eighteen months later. That being said, everyone is different and some people hang on a stage 4 for longer. I suggest you ask your doctor a bit more detail about dietary restrictions. What you have been told is a bit vague. You probably don't need to be on a full blown dietary restriction at this point, so some of the stuff you find on-line maybe a bit excessive, particularly as it already sounds as if you restrict dairy intake.
The Doctors have been very vague with me as they say they want to investigate the bowel cancer first before they 'tweak' my kidneys. All I know so far is that my GFR is 57 and that I am anaemic. The doctor I saw came across as very blasai . Do you think I should see another doctor?
A previous blood test that I had 18 months ago showed everything as fine so to me it looks like it has developed over the last 18 months. I have had urinary infections in the past so I am wondering if it has started then?!
Newly diagnose with CKD and in need of loads of advice
By doctors do you mean a GP or have you been referred on to a renal clinic or any other sort of clinic ? You sound like you need tests done but what type of doctor is sorting this out for you ? A few people on here have all pointed out things that could nned checked, and also things you definately need to know, you could always write suggestions down and approach your dr with them. Depending on how helpful the answers are then you could consider seeing another dr. But you really do need to stress you feel the kidney problem is really worrying you as well as the bowel cancer threat as well. Hope you get some answers soon jan
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
Thats a good idea and write all your questions and worries down, its hard to remember everything and even harder to be assertive sometimes. Good luck, let me know how it goes and remember just ask or chat here anytime. Speak soon jan
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
Hello Shanni I can.t add much more to what Amanda and Jan have already said to you, but I will say this everyone is different but I had kidney function at your level for years and its only in the last 2 years it declined to stage 5, I would ask your GP to refer you to a renal unit even if its just to ease your mind.....speaking to the right doctors can help so like Jan says write everything down and ask as many questions you like to find an answer to your situation .............good luck ............
, it is very understandable you are worried. It also must be a terrible shock to possibly have bowel cancer and a kidney problem as well. You really need your doctor to clarify the situation for you i.e why has your kidney function declined ?, can it be related to cancer or is this 2 seperate issues ? and lastly why are they not dealing with both at the same time ? Talking to a dietician is a very good idea. Your lifestyle is so healthy this will help you I am sure. Ask any questions on here everyone is very helpful and posative, or if you are just plain old down and want a moan about it or a chat do that as well. Let us know how you are getting on and nice to meet you Jan 
. Do you think I should see another doctor?